Lyme: 'An epidemic out of control'

Misdiagnosis and conflicting information is making it difficult to diagnose and treat the tick-borne illness.

By Julie Sherwood jsherwood@messengerpostmedia.com

CANANDAIGUA — A long driveway trimmed with trees leads to the Messina home on Wells Curtis Road.

The earth-tone, colonial-style house sports a lush, spacious lawn. A back deck overlooks bird feeders and pristine pond with a dock.

The bucolic setting belies 15 agonizing months John Messina experienced mounting and debilitating pain that led him in October 2016 to tell his doctor: “I can’t take it anymore.”

Just inside glass doors off the deck, he points to a kitchen filled with pill bottles and a syringe. Still dealing with pain that comes and goes, Messina is eight months into treatment following a long-overdue diagnosis of Lyme disease. It was in July 2015 that his wife, Maureen, removed a tick from his hip. Days later he had aches and pains and in a few weeks, a rash and fever. An initial blood test for Lyme disease came back negative, preceding months of anguish, increasing ailments and misdiagnosis. Insisting he had Lyme, no doctor would pursue it after that initial, negative test result, until finally, last October, John demanded he be tested again.

Messina, 55, doesn’t know how much longer he will have to be on the strict regimen of drugs and related treatment for the damage from Lyme. He is working in his landscape business, doing his best to keep up his long-established fitness routine of working out at the YMCA and other activities. He is determined to do all he can for himself, his family, and others.

In telling his story, Messina hopes others can learn from his experience.

‘The great imitator’

The Centers for Disease Control and Prevention estimates 300,000 people are diagnosed with Lyme disease every year in the U.S. — that’s 1.5 times the number of women diagnosed with breast cancer and six times the number of people diagnosed in the U.S. annually with HIV/AIDS.

Many experts believe the true number of cases is much higher because diagnosing Lyme can be difficult. Many people who actually have Lyme may be misdiagnosed with other conditions.

Over the last 10 years, the incidence of Lyme disease doubled. New York has the highest number of people reporting Lyme infection. And the CDC says only 10 to 12 percent of actual numbers are reported with about 94 percent of all Lyme cases coming from just 12 states.

“We have an epidemic out of control,” said Dr. Ronald Stram, founder and medical director of the Stram Center for Integrative Medicine. The center, with sites near Albany and in Bennington, Vermont, takes a holistic approach to health with a team of medical doctors, primary care nurses, acupuncturists and other healthcare professionals. Stram Center practitioners are trained by the International Lyme and Associated Diseases Society, considered the foremost scientific and research organization for Lyme disease diagnosis and treatment.

“Lyme is not like most other diseases,” said Stram.

Unlike strep throat, urinary tract infection, food poisoning and other conditions that are easy to diagnose, Lyme does not give a clear clinical picture with a clear treatment. Lyme hides in areas of the body where it can evade diagnosis.

“It affects a body gradually and insidiously, over time. It is stealthy in getting to the organs, the brain, the heart, the gut,” Stram said.

In Ontario County, providers are concerned and are seeing a surge in tick bites.

“There is no doubt I have seen more patients with tick bites in the last two years than I have in the prior 20 years combined,” said Dr. Michael Foote, with Thompson Health’s Honeoye Family Practice. He has diagnosed several patients in his practice with Lyme disease over the past year. Diagnosing Lyme is challenging, especially when a patient doesn’t get the classic symptom of a bull's-eye rash, Foote said.

Lyme can mimic every disease process, including chronic fatigue syndrome, fibromyalgia, autoimmune conditions like multiple sclerosis, and psychiatric conditions like depression and anxiety, said Dr. Richard I. Horowitz, an internationally renowned physician on Lyme disease who collaborates with the Stram Center. Lyme can also cause significant memory and concentration problems, mimicking early dementia, Horowitz writes in his book, “Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease.”

Maps showing prevalence of Lyme disease look the same as maps of those diseases Lyme mimics, said Dr. Stram. “It is the great imitator.”

Complicating matters: There are 10 different strains of Lyme. Most people don’t really know if they have Lyme and “we don’t have an accurate test,” Stram said. If an infected person is tested too early or too late after a bite, the test may come back negative.

An average patient sees five doctors over nearly two years before being diagnosed, according to the Stram Center. Short treatment courses have resulted in upward of 40 percent relapse rate, especially if treatment is delayed.

Forty percent of Lyme patients end up with long-term health problems.

Two stories

As owner of Lawngevity Lawn & Landscape for years, Messina knows about outdoor pests, their potential to spread disease, and ways to protect himself. What he didn’t know until after contracting Lyme disease was how difficult it can be to get proper diagnosis and treatment. Conflicting information and attitudes about Lyme also muddied the waters. Messina is keeping a journal of his experience and has connected with a long list of other people in the Canandaigua area who share similar stories.

One of those is Tina (Gargan) LaBorde, who grew up in Canandaigua and now lives in Palmyra. When she learned what happened to Messina, she saw similarities to her own experience. Luckily for LaBorde, her first test for Lyme came back positive. But, like Messina, she initially believed she was not at risk having followed the common wisdom that by properly removing the tick within 24 hours and not seeing the widely publicized bull's-eye rash as evidence of Lyme, she would be OK.

But it didn’t take long for her to experience symptoms.

“In a few days I started to feel very fatigued,” said LaBorde, 37, a wife and mother of two. Being used to an active lifestyle — she coaches sports, volunteers at her church and is a bus driver for Victor Central School District — she couldn’t figure out why she was so exhausted.

Then a rash on her stomach where she had removed the tick grew and itched like crazy. She became more fatigued and “mentally fuzzy,” forgetting names and other things that was so unlike her, she said. Then, as she and a friend were trying on dresses in preparation to be in a wedding party, her friend learned what she was going through and urged her to see a doctor. Along with the positive Lyme test, her blood showed a number of autoimmune illnesses, which LaBorde said she was also treated for with drugs.

Still, she became sicker.

“I had chills and my body hurt so bad,” she said. She was dizzy and nauseous. She later learned the Lyme had brought on symptoms of rheumatoid arthritis.

LaBorde said she wishes she had gone to a doctor right way, instead of waiting those few weeks. She wishes she had saved the tick, which is recommended so it can be tested for Lyme and other diseases it can carry.

Like Messina, she learned the importance of advocating for yourself. LaBorde said she also learned the importance of getting tested and treated as quickly as possible.

Messina’s story is more involved — and painful.

“I woke up one morning and found a tick on my side,” he said, of how it began.

“It’s crazy — that something the size of a sesame seed can have such a detrimental effect,” said his wife, Maureen, who removed the tick whose bite never caused a bull's-eye rash.

Messina’s earliest symptoms, within a few weeks, began with a pain in his left side behind his ribs. He had trouble breathing and could hardly move. A trip to the emergency department “didn’t find anything wrong,” Messina said. The pain subsided, but soon flared up in his lower back. It got so bad he had to be prescribed a powerful opioid pain medication, oxycodone, to cope. In August, he ran a high fever. His doctor did a blood test for Lyme. It came back negative. In September his wrist was so painful he couldn’t hold equipment.

A turning point was a trip to Naples for ice cream. “Sadly, I could not even pull the spoon out of the ice cream,” he said. “This is when we realized how serious this had become.”

His doctor recommended seeing a rheumatologist. By early 2016, Messina said he was on drugs for rheumatoid arthritis, though he continued to have pains in parts of his body that grew worse as he was prescribed various drugs for rheumatoid arthritis or osteoarthritis.

“Each time I saw the rheumatologist I told him I felt it had to do with the tick bite, rash and fever,” Messina said, but the doctor “thought it was either rheumatoid arthritis or osteoarthritis.”

By October 2016, he was at the end of his rope. Having trouble walking from pain in his lower back and hips, he was also dealing with pain that moved throughout various parts of his body. He downed three or four energy drinks to make it through a work day, collapsed when he got home, and struggled with memory.

“I would repeat the same question or sentence three times in 5 minutes or go to an intersection in Canandaigua and not be sure where I was,” he said. He had trouble breathing, although his lungs “checked out fine,” he said. Migraine headaches, blurry vision and nausea would come and go.

“At times my ribs would feel like they had been used for a punching bag,” Messina said.

In December 2016, he went to yet another specialist “to finally get some answers,” he said. But he was more confused after being told he would probably be cured by one round of the antibiotic he was given back when he first showed Lyme symptoms.

“This was quite a blow. With the problems I had had walking in November and December and how fast it had gotten worse in my body, I thought I would be in a wheelchair within a year. I was lost at this point,” said Messina, who is 55 and felt decades older. Then, in talking to a friend, he learned about the Stram Center.

“When I went to the website, I thought I was reading my story,” Messina said. He got on track with 28 days of the antibiotic doxycycline and other needed treatments and medications. It started his healing process, Messina said, though he has a long way to go.

Conflicts and hope

More research and education for physicians is crucial in dealing with Lyme, according to Dr. Stram. The Stram Center draws parallels between misunderstanding of Lyme today and past mysterious diseases such as AIDS and other conditions throughout the 20th century.

There’s also a problem because of multiple perspectives regarding the best treatment procedures, according to Stram. Two professional medical societies specialize in the diagnosis and treatment of Lyme. The CDC and the nation's insurance companies have historically selected the guidelines authored by the Infectious Diseases Society of America to be the sole voice for treatment advice, though Lyme is a complex and insufficiently understood illness.

The Lyme Disease Treatment Guidelines, authored by the Infectious Diseases Society of America, are under review and citizens are urged to speak out for guidelines that reflect a complete, fair, transparent, and trustworthy process.

At the state government level, two states — Maryland and Virginia — have passed laws aimed at helping patients. The legislation in each state says patients being tested for Lyme must be officially informed that a negative test result does not mean they don’t have Lyme disease.

In New York state, the Legislature last year passed a bill requiring the state Department of Health to create a public prevention and awareness program that includes methods for effective prevention — the safe use of insect repellant, best practices for tick removal, methods for reducing exposure and what to do once the tick is removed.

Last month, a photo op at the state Capitol showed a group of senators, each taking a bite of lime (literally) for a “Stop the bite” awareness campaign and to announce legislation. The bills address pest control, access to health insurance for people diagnosed with chronic Lyme and tick-borne diseases, grants for graduate medical education in the diseases, and centers of excellence and resource centers for Lyme and tick-borne disease.

Also last month, state Sen. Pam Helming, R-Canandaigua, became one of the newest members to be named to the Senate Task Force on Lyme and Tick-Borne Diseases. The task force, started in 2013, is charged with improving prevention, diagnosis and treatment of the diseases.

“The Finger Lakes region has seen a significant increase in cases of Lyme and tick-borne diseases in recent years,” Helming stated. “As the state senator who represents a large portion of the Finger Lakes, I believe it is vital that the state ramp up prevention efforts to protect residents against the spread of these horrible diseases. I look forward to working with my colleagues on the task force to identify and implement solutions that directly address this growing problem.”

News that matters to you

THE ISSUE Lyme disease is spreading at an alarming rate.

LOCAL IMPACT New York state has the highest number of people reporting Lyme infection, and the Finger Lakes is a hot spot.

How to protect against ticks

Avoid tick habitat

Ticks tend to be near the ground, in leaf litter, grasses, bushes and fallen logs. High risk activities include playing in leaves, gathering firewood and leaning against tree trunks. When you hike, stay on cleared trails instead of walking across grassy fields.

Dress defensively

Wear shoes, socks, long pants and long sleeves. Tie back long hair and wear a hat. Light-colored clothing helps you spot ticks before they cause trouble.

You can purchase clothing that has been pretreated with the repellent permethrin at outdoor recreation stores. Spraying footwear with permethrin will prevent ticks from crawling up your shoes. Use repellent on exposed skin.

Studies show that repellents with DEET, picaridin or lemon eucalyptus oil are the most effective.

Check for ticks

When outdoors, periodically inspect your clothing and skin for ticks. Brush off those that aren’t attached and remove any that are.

Shower

Once home, take a shower right away. This will wash away unattached ticks and offer a good chance to thoroughly inspect yourself. Feel for bumps that might be embedded ticks. Pay careful attention to hidden places, including groin, armpits, back of knees, belly button and scalp. Parents should check their children.

Hot dryer

Running your clothes in a hot dryer for 10 minutes before you wash them will kill any ticks that may be there.